Accepting the Minority

It has been a LONG time since I lasted blogged. Whoops. Thankfully though it's just been because life got in the way, not because I've been unwell - far from it in fact!

I've had monthly blood test number 6 of 60 (we are monitored for 5 years from the start of treatment, I'm already counting down) and I'm pleased to report that my Lymphocytes are still behaving and not repopulating too quickly. They are currently at a reasonable level of 0.51, 6 months post round 1 of treatment. I'm hoping they will get to 0.9/1.0 by next February to put me in good stead for round 2. 

My health has been pretty good in the last few months, I've had a few blips along the way where my platelet count dropped and I developed menorrhagia and then I had a pseudo-relapse/exacerbation where my body "remembered" the symptoms of a previous relapse for a few hours and I panicked and thought I was going into a full relapse. Thankfully, my support network sprung into action (Jonny, Sue and Pete - sorry Sue for wailing down the phone!) and I recovered quickly. 
On the whole, life is good. I've been working normal hours and coming home to cook afterwards (but resting in the evening - I'm learning!). I've been back in the garden a lot - my Tomatoes have done amazingly, I'm going to be knee deep in soup this winter and I literally cannot wait to dig up the maincrop spuds, eeee! Again, no idea where I'll put them, mash 'em and freeze 'em perhaps? It will be lovely to give lots to friends and family too.

The hardest thing I have found since my treatment and the diagnosis perhaps is that although I am starting to learn my limits, sometimes they are decided for me, often without discussion. I touched on this in my last post 3 months ago when I was finding this most difficult and although I still find it hurtful now, it's becoming less so. 
I am very aware now of belonging to a part of society that is a minority, and there are certain things that I can't always take for granted. I can't assume that the opportunities I once had will come up so easily, because now I come with an added risk factor. And although I am protected by the Disability Act, there are still things that aren't covered by this. Which has sadly been a particular problem in my work.
The last few months have been an emotional roller coaster as a result, I never quite expected to be sat in front of the lovely lady at Occupational Health asking what more I can do to help others trust that I AM still able do the work that I used to do. She is incredibly supportive and writes me lovely reports each time outlining what I am capable of, she also always makes a joke about me being the only person that steps into her office demanding to be given more work. The only thing that we can do to build trust seems to involve spending the next few years "writing a new rule book", by demonstrating good health, (i.e. not requiring time off work because I've overdone it in the week) risk assessing and planning for every probability - always having a plan B and always being prepared.
(Which reminds me of when me and my friend Emily used to laugh at how our Mothers packed suncream, sunhats, brollies and raincoats for every school trip in Primary school regardless of the activity, season, or the weather! Always be prepared!)

It does make me think though, that when you have a disability or any chronic illness, you have to play the game to a higher level in order to prevail. You also have to become much more patient, because it takes time to build trust and to educate people to overcome their assumptions and their prejudices, and trust me, boy do those assumptions start to grate on you quickly. 
I can definitely understand why some people don't allow their illness to become public knowledge, because it's easy for others to make quick assumptions about their shortcomings, in fact it's hard not to UNTIL you are educated otherwise.

But it's not just me, or others with something that puts them in the "minority" who have the opportunity to provide the information that helps to educate others. Both those who are lucky enough to be in the majority and those of us in the minority can and SHOULD help to educate others. After all, we live in a society now that is comprised of so many different minorities - race, gender, religion, health etc that we really should be trying harder to work towards equality.

Potatoes, Chickens and Half-naked Royalty

Helloooooo summer weather! 

Wow, what a difference it has made to have had some decent weather. I am VERY much in full Tom and Barbara mode (of The Good Life fame, hence the blog title). 
The potatoes are merrily growing away, the greenhouse looks like day of the triffids after being packed full of tomato seedlings and the onions are now free from their "cat-proof netting" after Callie dug the first lot up. Pesky cat. 
As ever, I have not been the most sensible gardener and I have refused to throw any of the seedlings that have sprouted, none of this thin out the weak ones, nope. I know that this doesn't make economical sense (and the 250L of compost that I bought last weekend and got through rather quickly seems to back this up) but I don't like to kill anything off intentionally - it's made the effort to grow after all! I may regret this when I have eleventybillion things in pots to water in the summer and the veg patch looks like a forest.

Second step into the world of Tom and Barbara is one that I wasn't quite expecting. Jonny has recently decided that he wants to keep some chickens in the back garden and is planning on building a coop. I'm not totally sure how I feel about this, mainly because a) we have a cat with a penchant for anything that has wings and b) because I'm not sure I want to share my veg patch, which will inevitably get munched on. If the buggers eat my potatoes then they are going straight into the pot with any remaining veg! I will concede that the lure of fresh eggs from the chickens is great, but the cleaning out of the coop is less favourable. Although I am relieved to think that next February it'll be round 2 of Lemtrada and therefore I get 3 months off cat litter tray duty and potential chicken coop cleaning duty due to the bacteria risk and zero lymphocytes. Oh what a hardship!! I've got to have some perks though right?!

I'm off to see my MS nurse tomorrow, I have no idea which one it is, but both Chris and Pete are lovely and very knowledgeable; it's more like going to see a friend than a nurse. It will be nice to report that so far, everything is going pretty well. I've just started exercising again, I'm back to full working capacity including Woodwind repairs and I'm generally feeling positive. I think energy levels have fluctuated a bit more recently so I'm going to ask about supplements and diet etc. but it does seem to be a bit hit and miss as to what works. Also no one can agree on what the correct dosage of vitamin D3 is, not even the neurologists which is a little unhelpful. 

My current supplements are:
Vitamin D3 3000iu
Biotin 1000iu
Evening Primrose oil 1000iu

I'm not totally convinced that anything is doing much at the moment, but I did feel a big difference when I first started taking them so I either need to up the dosages or sort my gut out. A friend of mine suspects that I may have a leaky gut so has suggested cutting out sugar and yeast to help improve absorption. I crave sugar more now than ever before so I'm reluctant to do this but suspect it's probably worth a try. I think the shock of cutting out alcohol may genuinely turn me into a psycho though. I'm fairly sure I'll set out with good intentions at the beginning of the week, get to Tuesday (where I'm tortured by teaching 4 hours of Y8 and Y9) and end up seeing off a bottle of White Zinfandel whilst binge watching Suits on Netflix. Speaking of which, I can't quite get over the fact that Meghan Markle is frequently seen in a variety of compromising positions - argh! Half naked, nearly royalty! Nooo my eyes!

I will not be watching the Royal wedding this weekend as I have been given permission to attend the D of E practice expedition run by school. Hurrah! This is big news as at the present time of writing, I've been pretty much banned from anything related to extra-curricular activities because I'm "not well enough". In fact, I'm fairly sure I'm probably not meant to be on this trip either BUT as you might gather from my tone, I'm not impressed about being told what I can and can't do and as my return to work notes only specified music related extra-curricular activities... I'm going to misbehave and deal with the consequences later.

More on being told "no, you're too ill" by a variety of people and encouraged to fight back by my fantastically supportive occupational health therapist in the next post...

Over and out

C x

Retraining my B and T cells

My second lot of blood test results are in and things are looking good. My lymphocyte levels were at 0.04 for the first month and have only increased to 0.3 this month. 

My understanding of this so far is that this is good although as I will explain in this post, in the UK it's harder for us to tell compared to our US comrades.

To explain, Lymphocytes are a type of white blood cells. They are part of the full blood count (FBC) that will show up on your blood tests, normal lymphocyte levels are between 1.0-4.0. 

The tricky bit to explain is that there are different types of lymphocyte called T and B cells and then within this there are different types of T cells all of which have different jobs! If you're really interested in the science behind it then the following YouTube video explains T and B cells very clearly from about 4 minutes in. 

I found this video through a post by another Lemtrada blogger called Tracey 

In a nutshell, I translate that to mean that the slower the B and T cells repopulate, the less damage being done! 

The drug company website for Lemtrada/Alemtuzumab has a very whizzy graph to show what the suggested rate of lymphocyte repopulation is. However this is where things get complicated as in the UK we only show the general Lymphocyte count, in the US they split it into the specific types of B and T cells (CD4+, CD8+/CD19+) on their blood test results so it's far easier to track your recovery: 

So essentially, this graph just frustrates me as I don't know the individual levels for my Lymphocytes! GRR. For me, knowledge is power. Yes I'd probably fret over my levels on a monthly basis (and I have another 5 years of monthly blood tests to endure, I can just hear my veins crying!) but at the same time, I LIKE knowing what is going on. One of the most interesting things for me so far has been seeing my MRI scan pictures and understanding exactly what is going on in my brain and my spine. I find it fascinating! 

Based on the general Lemtrada patient population in the UK, it seems to me that aiming to stay under 1.0 for at least the first 6 months is a good thing and I've seen lots of Lem patients who only reach normal levels of 1.0 by their 11th/12th months of treatment. On the  other hand, (tricky balancing act that this Lymphocyte malarky is!) there are also reports of Lemtrada patients having their second round of treatment postponed because their lymphocyte levels were too low after a year, several of these patients had peaked at 0.6 and were denied treatment until their levels rose. So here's hoping my lymphocytes continue to do what they are supposed to for the next 12 months!

C x

MS is a marathon, not a sprint.

Since my last post was about a month ago, it's time for an update. Lots to report on, some good and some frustrating. 

I have successfully returned to work, which I'm pleased to say has been going really well. It was pretty overwhelming on the first day and I did cry within the first hour! Thankfully my lovely colleague Celena was on hand to mop up my tears, ply me with tea and to firmly tell me not to overdo it. I think what hit me the hardest was that it initially didn't feel the same as it had done pre-treatment. I had a panicky moment of "Is this the right thing to do? Should I just accept that I don't have the stamina now and quit?" But thankfully after spending a few days teaching alongside our amazing supply music teacher Isobel and doing a very gentle phased return to work, I soon felt a lot more confident and able to take on more responsibility as the week progressed. It was also just lovely to see all the staff and students again after such a long time off.

I'm pleased to report that I'm now teaching my normal timetable again, just as I did pre-treatment and although it is still too tiring to do much after a day of teaching, (thank goodness for freezer meals!) things are going well and hopefully will continue to do so.

Fatigue and my inability to accept it, is quite a big issue at the moment. I am trying to learn to listen to my body more, but it's easy to overdo it when I'm seemingly feeling great. I learnt the hard way about overdoing it through an experience I had after I joined my local MS support group. I am very lucky to have a group who meet regularly only 5 minutes down the road from me. The group is run by lots of very lovely volunteers who support the local MS community. The group hosts chair-based yoga/physio sessions each week, run by a guy called Phil who has MS himself. 
Unfortunately, the first week I went to the group I completely underestimated just how hard chair yoga actually is. As we started the session, I honestly thought to myself "This is great! All seems nice and easy, this will be a doddle if the whole hour is like this!" But no, that was just the warm up, and the moves got harder and harder. Phil was fab and did three different levels for each of the moves. I foolishly assumed I was fine to do the hardest each time as both ladies on either side of me seemed to be managing them fine. As one lady was in a wheelchair and the other had a walker I also stupidly assumed that anything they could do, I could surely do more easily? HA! What a fool.
What I had neglected to realise was that both of these lovely ladies were absolute PROS at chair yoga. Like, scarily good. No missing out moves or becoming unbalanced for them, no no! Little beginner chair-yogi me was doing my best to keep up with a pair of yoga gurus. A bit like signing up for the advanced yoga class when you've never done it before! So there I was, getting myself tied up in knots and slipping off the chair while the others were grace and fluidity personified. Oh the shame!

So unsurprisingly I completely overdid it, and ached for several days after. I also learnt a very hard lesson about doing too much too soon.
I felt like such a muppet and found it difficult to deal with until I returned to the class the week after, not to join in (I figured just walking to the class was PLENTY enough exercise that day!) but to talk to the others and to Phil. They all reminded me that things for me have changed now and will continue to change as my body adapts to the treatment I've had. Phil said to me the most important thing I think I've heard yet - MS is a marathon and not a sprint. 
It's all about learning your limits and pacing yourself. Part of my problem is that I still have a lot of denial about my limits, for example I consider my balance to be pretty normal. But yet based on my results on the Wii fit it's equal to that of someone twice my age.
There have been two occasions recently that I'm not proud of where I have actually made myself tired to the point of sickness as sometimes with tiredness comes dizzy spells and poor vision. Not handling energy levels appropriately has meant that I've missed out on two family weekends because I've overdone it. The only things that revives me in those moments is to submit to the fatigue for a day (at worst two) and then I feel fine. Unfortunately I'm still of the mindset that it means I'm back to normal so I prance around doing too much and not letting anyone tell me otherwise and so the cycle begins again! 


I'm slowly (very slowly) learning that I NEED to plan ahead and prioritize, and that it's actually incredibly detrimental to my recovery to keep doing this. This is something that is particularly important for my work this term. Term 5 is notoriously busy with coursework deadlines, mock exams, recitals and last minute revision sessions. My various bosses have been brilliant at helping me return to work but I've been reminded this week that I must NOT try to be superwoman. My biggest priority is simply keeping myself well, stopping this ridiculous cycle of "ooh yay energy let's do everything now.....oops I've wrecked my body" and generally being sensible. And I shall definitely be trying to do this.

C x

Support networks

So today, I wanted to write a post on the importance of having a support network, what it means and how it's helped me. I thought I'd look up the proper definition as a starting point but I'm surprised that when googling the term, very little comes back in the search results.

The Cambridge Dictionary states that a support network is: 

"a group of people who provide emotional and practical help to someone in serious difficulty"

I definitely agree with the first part about emotional and practical help, but I strongly disagree with the serious difficulty bit, perhaps because I'm still somewhat in denial about how well the word serious and MS go together.
Yes it is serious I suppose because it's not going to go away, but serious implies that it's very bad and something to be afraid of and I feel that it is neither. The snapshot right now is that MS is an annoying challenge that certainly has the potential to get pretty tough. But today things are positive and it's not impossible to live with, so I'm grateful for that.

Secondly, why should you have to be in "serious difficulty" to need a support network? I would love to say that I know someone who walks through life in one big happy bubble and has had very few challenges to cope with, but the reality is; that isn't what real life is like! Having multiple people from different walks of life to talk to and frankly help you exist, is super important. Surely you are more likely to get yourself into serious difficulty if you are just trying to "do it alone?" Just a thought.



When googling support networks as a topic, I found a really good advice page on a website that discusses "how to build a support network" building-a-good-support-network
This is all very well and certainly looks to be a helpful page, but it doesn't address the big issue of actually being brave enough to ask for support in the first place, or how to find it outside your close friends and family. 
What about those of us that struggle to ask for help in the first place? I personally find it VERY hard to ask for and accept help. I've had to become a lot better at it recently because I can't get better on my own and I can't expect Jonny to do everything either. However I have always found it hard because I don't like to feel like I'm putting people out, asking them to go the extra mile, inconveniencing them. I feel most comfortable when I'M the one doing the helping out and looking after. I adore cooking for people and some of my favourite recipes to cook are the ones that require hours of work in the kitchen, a pestle and mortar and the use of nearly every pot/pan/utensil that we possess. I am at my happiest when I have a full house of friends and family with matching dinnerware and glassware on the table, a bottle of something tasty in the fridge and a maybe a Tagine in the oven. As lots of people can probably relate with, I would always far rather be the provider of care or the helper than the help-ee. There is probably a better word for that, if not I'll be submitting helpee to the Cambridge English Dictionary later on...



Anyway, rambling on, so my recent experience of actually letting people in and letting them help me is a very positive one. In fact, I think really it's what has kept me going. My support network is pretty sizeable which is fab. It consists of various tiers:

• Immediate family - Jonny my husband. Two parents, a brother and potential sister-in-law, two in-laws, 3 brother-in-laws, a sister-in-law and Callie the cat. 
• Close family - literally too many to list, lots of lovely Aunts, Uncles, Cousins, 2nd Cousins etc and that's on both sides of the family. 
• Friends - school friends, old housemates, colleagues, church friends, fellow musicians, old teachers etc 
• Home group - see below 
• The online MS community 
• Fellow Lemtrada buddies 
• The ones that don't fit in a box! 

The last bullet point I should elaborate on. Something that is most definitely worth mentioning with regards to support networks, is the idea of having a total stranger to talk to. Admittedly, I realise that's actually what counselling is - someone who is detached from the emotion of being personally connected to you. Someone who will simply just listen, and actually when you really care for someone, that's super hard to do. It's hard not to automatically say "you'll get through this", "you're so brave/strong" or "it's okay". I'm not saying don't ever say those things, but when you're really suffering it's often the last thing you want to hear. I am a real hypocrite saying this, because I find this practically impossible to do when someone I care for or even a total stranger is upset. It takes real skill just to listen.

I may still go down the route of talking to a counsellor, but so far, the online MS community has worked really for me in that branch of my support network - a bunch of online strangers who I may never meet in person, who don't necessarily know the ins and outs of my life outside MS but who provide support and often have no choice but to wait until you've finished 'speaking' because you're writing posts!

The point I realised I had a need for this particular branch of the support network, was when I was coming to terms with my diagnosis and I think entering the grief stage. The idea of grieving when no one has died is tricky to understand and I can imagine for those that have lost someone, it probably sounds narcissistic of me to even consider using that word. But the definition of grieving is:


"Deep or intense sorrow or distress"


In my opinion, part of getting your head around being diagnosed with something that is never going to go away, is to grieve and this seems to be a thought echoed by lots of others dealing with the unexpected gifts life throws at you.

For me, grieving meant the most disgustingly unattractive crying I've ever done! We're talking proper movie style crying that is loud, messy, sometimes a little scary and you're torn between feeling ridiculous and riding the wave.
It sounds very self-indulgent and that's certainly how I feel sometimes when I'm really upset but I've learnt quickly it's also really important just to let rip, and for me that's nearly always in private. I felt like such a fool for wanting to speak to a total stranger when I felt like this, especially in the knowledge that I had such an amazing support network - if you've read the list above, I literally couldn't pack many more people in if I tried!
I can't explain why in that moment, I didn't want to share my grief with those that loved me. I don't feel ashamed, I'm perfectly able to (and often do) tell Jonny, my bestie Lea or my Mum when I've had a bad day. But talking with others in the same situation, who are taking the same treatment, and often sharing the same worries is super helpful. A problem shared is a problem halved is that how the old adage goes? Well in the Women with MS group there are over 5000 members and in the specialist Lemtrada UK group there are a further 900, so any small query that you might have, day or night is nearly always answered - usually by about 50 rather fierce MS warriors all at once!



The other bullet point I need to expand on is my Home group. For those of you who haven't clocked it yet I have a fairly strong faith. It's kind of scary to talk about it, because religion is a bit like politics - we've all got different opinions, sometimes rather passionate ones. But one of the biggest parts of my support networks comes from a group of people in the 20s-30s homegroup (which is starting to get slightly ironic as several of us are now on the wrong... sorry RIGHT side of 30).

To provide some context, I attend St Mary's Cogges (Cogges is a bit of Witney that has a farm, there are two St Mary's so this is how we separate the two - unfortunately something I didn't make particularly clear on my wedding invites which caused rather a lot of confusion on the day!)
Something that my church encourages outside of the usual attending a Sunday service stuff is to join what we call a home group. Yes folks, not only do I often endure 2 hours of God stuff on a Sunday, I'm bonkers enough to put myself through another 2 hours in the week. And I'd just like to put this out there, I was originally bribed into it with wine because it was a group that met in a pub (Pub Theology it was called!) which was great fun and involved lots of thought provoking discussions. Then before I knew it I was part of a group with the same people but hosted in people's homes which involved curling up on a different sofa each week having arguments about how realistic it was to actually feed 5000 people, and why were there so many prostitutes in the old testament. (Those were my first two questions, I dread to think what impression I gave in the first few weeks!)

Now I can imagine this may sound like a cult or something really drab to be committed to but let me explain what our home group is and WHY the entire group have been dragged into my support network. Every Wednesday I spend 2 hours with 11 other people at a different house each week (we all take it in turns to host because can you imagine having to keep the living tidy on a weekly basis? No chance!) and we spend time catching up, praying for each other and when we're focussed enough - trying to decipher what on earth some of the bits of the bible are going on about otherwise known as a bible study.

I was INCREDIBLY skeptical about becoming part of a homegroup as I am terrible at committing to anything on a week night that isn't work related, and I do also have a bit of a love affair with my very comfy sofa and a large glass of wine, (yes even on a weeknight, you'd need one too if you taught quadruple KS3 on a Thursday trust me.)

Anyway, I'm pleased to say that with our Homegroup it's not been the scary commitment I thought it would be. No one hunts me down if I have too much work on to turn up, no question is too silly and there has only been one occasion where I "couldn't be bothered" to go and I felt sad to have missed it afterwards. I haven't known the people in my Homegroup for long, some for 4 years, some only for 1 or 2, but we are all at a similar stage of life and meeting up on a regular basis provides a really unique level of support. We share and pray for some fairly classic worries for our age group like career changes, saving up for houses, relationships with colleague/friends, politics, whether or not we'd ever fit a dishwasher into the kitchen etc. Then sadly sometimes our attention turns to the more serious worries like the health of loved ones, each other's personal battles, looking after and providing support to those suffering loss - basically the whys and what ifs. It is a real comfort to share in both each other's good news and bad news and to offer advice and support. I feel like I've made us all sound like very mature adults but in reality things also often descend into chaos and 40 minutes of our time spent together will involve very high end conversations like "How many plastic balls would we buy in order to turn someones living room into a ball pit?" and "How much would it cost to rent a castle for the weekend" - an awful lot but there are several on Air BnB if anyone has a need.


Anyway I digress, the other ways these marvelous people have helped me is to support me in whatever way they can. Providing meals for the freezer, sending flowers, providing fun activities for hospital, sitting with me all day during my treatment, helping me organise lifts to hospital and basically letting me cry, whinge, rant and inundate them with prayer requests for simple things like getting the darn cannula in first time! Something I'm also proud to say is that for a long time, they have no longer been just people from church, they're also very much my friends.


Speaking of friends - last little bit to add! I have two super besties who I don't get to see often but thanks to social media, we communicate daily. Despite what I might sound like with all this "I'm a member of this facebook group" blah blah blah, I promise I'm not a social media addict and I don't like it that much because of the impact it has on our young people. My current soapbox topic (of which there are several) is that I really don't like how social media has changed our society, particularly with regards to causing anxiety and the desire to gain "likes". That's a rant for another day though. 
What I do like, is how well it connects me to the members of my support network who live at what feels like the ends of the Earth - in reality this is my two close friends Lea and Cat who live in Yorkshire and Suffolk respectively. We communicate on WhatsApp, and it's particularly lovely because Lea is mum to my Godson and she regularly posts pictures of his latest antics and his little brother too. Luckily we do get to meet up once or twice a year with husbands in tow and it usually involves a weekend away to set the world to rights whilst bathing in a hot tub, brill!


So, to summarise: support networks rock, social media isn't always awful and I've finally worked out how to change the settings on the blog to allow comments without anyone having to create some random profile - Sorry Kathie and Aunty Janet T!


C x

2 Weeks post treatment - cabin fever kicking in!

It is officially two weeks today since I finished my Lemtrada treatment and I'm pleased to say that I feel that I am doing better than expected.

In my opinion I've had very few side effect symptoms since the treatment stopped, for which I am really grateful. 

The first weekend after treatment I slept through nearly all of both days, I was awake for roughly 6 hours each day and that was in-between cat naps! And boy did the sleep feel GOOD. In hindsight, I wish that I'd been able to sleep more in hospital as I think it would've really helped. My lem buddy Pete wore noise-cancelling headphones to ensure he could listen to music and get some good cat naps in. Jonny is now lusting after a pair of these and so am I because they seem like such a good idea when you're trying to sleep on a noisy hospital ward and your ear plugs keep falling out.

The first week of recovery at home featured lots of tiredness and feeling a bit like I'd been hit by a bus, simple things like showering absolutely floored me for the first few days but then actually, I've been used to that kind of fatigue coming and going over the last year and it certainly wasn't anything that worried me. Fatigue is a classic MS problem and is another thing that can't be predicted. Some days are totally normal and other days I have to rely on Jonny to wash and blow dry my hair for me. On those days even finding the energy to lift my arm above my shoulders to brush my hair can be hard, which is super frustrating but I think Jonny must've secretly wanted to be a hairdresser because he seems to love doing it for me bless him! 

That level of fatigue used to upset me a lot, but luckily it hasn't been an issue for the last few months. Frustratingly my hair is actually thinning post treatment but on the flip side, I still have A LOT of hair thanks to my Welsh genes. I've also got a few friends who seem to be experts in hair care who have recommended all sorts of things to keep me looking like cousin IT. Picture below for those of you that are too young for that reference. I'd like to point out that actually, I'm also too young seeing as the TV series started in 1964...

 

Other new post-treatment symptoms I've had to get used to are night sweats which, sorry to gross you out, should really be sponsored by Persil or Ariel and renamed "night waterfalls" because I now seem to sweat to the point where it's like someone has thrown a bucket of water over me and bedding and pyjamas end up being washed daily, argh. Good practice for the menopause I suppose! 

I've also developed the ability to get chilblains at the drop of a hat, probably from not moving around much as they're usually caused by poor circulation according to Dr Google. I can be sat happily reading a book, feeling normal when boom! My fingers and toes become itchy, hot and swollen within a matter of seconds. Luckily I have a rather large supply of piriton thanks to the goodie bag of drugs I was sent home with when leaving hospital, so the chilblains quickly disappear within a few minutes, phew.

Once of the most enjoyable side effects from the treatment is the steroid munchies, which have been fairly prolific. I suddenly get urges to eat everything and anything although I must admit I mainly have cravings for sweet things so chocolate is high on the binge eating list - swiftly followed by bananas thankfully. I seem to have a normal appetite for meals but the snacking in between is getting a little out of hand. I honestly feel a bit like Augustus Gloop from Charlie and the Chocolate Factory sometimes. Thankfully my weight has stayed mostly the same despite this, I'm fairly sure that I probably lose half a kilo each night from the night sweats, only to put it back on during the day! Don't try this at home folks, this is not the latest fad diet.

Last super thrilling symptom and the one that is the most annoying is shortness of breath. This seems to come on both randomly and after physical exertion, which in my case is mostly just running up the stairs these days. I can't predict the pattern of it yet which is annoying. For example, I can talk on the phone to Mum for 30-40 minutes and feel fine, but when Jonny comes home from work and the verbal diarrhea kicks in, I run out of breath after about 10 minutes of talking. Perhaps that says more about Jonny's ability to get words in edgeways than the actual perceived randomness of my shortness of breath! Either way, it's a little odd. I've been given an inhaler by the hospital which I use when desperate but I'm not hugely keen on relying on it. Deep breathing helps A LOT, the difference in my breathing after taking 30 focussed deep breaths is huge. I can only describe it as feeling like the air isn't going into my lungs but is coming out fine, or feeling like I'm breathing in "thin" air. After deep breathing things feel more normal. 

I have also started trying to make sure that I'm moving around regularly for short periods of time. I've been taking 20 minute walks around our housing estate and more recently I've been reacquainting myself with the wii fit, how very retro.

I can't really remember how long I've had it for, but the wii came out in 2006 and I remember that I bought it with some of my pit band earnings (I should elaborate, not as in coal mining, pit as in theatre pit) whilst at uni so I think I've had it for roughly ten years. I clearly hadn't used it for some time as the moment I got on the wii fit board it genuinely said "Is that really you Claire? You seem a lot heavier than the last time you logged in!". SCREW YOU WII FIT! To be fair to the pesky thing, according to my user profile when I last logged in (6 years ago it reckoned!) I had apparently weighed 2st less. 

Pfft. I shall not be bullied by judgmental technology!

So officially I have one more week to get this breathlessness problem sorted before I go back to work. I am super keen to get back in the classroom but very mindful of the incompatibility of being breathless and a music teacher. I'm hoping to keep getting myself up and about a bit more so that my stamina improves enough for me to be able to holler over the cacophony of 30 xylophones and remain standing up at the same time. Simple pleasures really!

I also hope to be out and about a bit more from this weekend onwards, as although the risk of catching everything and anything germy is still high, I'm not quite as terrified as I was before. Jonny unfortunately caught a cold at the end of my first week which threw us into chaos, but thankfully after being banished to the spare room for a week and my slightly OCD cleaning routine with door handles, towels, bedding, cushion covers, (you name it, I've washed it twice this week) I am pleased to report that so far I have not caught the cold! Woohoo! Who needs white blood cells?

C x

Day 4 & 5 of Lemtrada and accidentally getting high!

Before I began writing this blog I read quite a few other Lemtrada blogs to see what to expect on the journey and I noticed that several wrote little to nothing on day 4. Having now gone through it myself, I can totally understand why. 

During the first 3 days of treatment you receive an IV dose of 1000mg of Steroids (methypredisolone) to lower your chances of getting a serious infusion reaction (https://www.lemtrada.com/what-to-expect/during-treatment) before they give you the usual cocktail of Piriton, Lemtrada and Saline flushes. On day 4 and 5 however, you don't receive any steroids, which is probably why no one is well enough to write a blog on those days because we're all asleep! Steroids definitely made me hyper for the first few days but they do also have the downside of preventing you from sleeping through the night which many of my Lem buddies experienced during treatment week.

From what I can remember of Day 4, it mostly went without a hitch. I'd had a fairly good night's sleep despite the evening of Day 3 being rather uncomfortable, (the rash was fairly prolific at this point and I had to be plastered from head to toe in Eurax cream to combat the itching.) 

I arrived at the JR bright and early on Day 4 to be greeted by the lovely Sue (partner of my Lemtrada buddy Pete) who told me that Jane the Phlebotomist was on her way, cue instant calm and relief! Sue knew my daily panic was usually when and how I was being stabbed so to be told this straight away was just fab. Pete told me he'd had a bad flare up of the rash the night before and was still pretty intense that morning. I started to say "oh mine's all gone!" and then spotted the familiar little buggers appearing on my arms, bah. Spoke too soon! Sue and I both agreed it was just as well that Eurax sold a super-size tube as well as the normal size as we were both going through it at quite a pace. I have a habit of slapping it on like sun-tan lotion until I'm caked in it, not entirely sure it makes much of a difference but it certainly made me feel better.

So due to our Dalmatian impressions we needed the cannulas in ASAP to get the fast acting IV piriton into our systems. I seem to have suppressed the memory of the cannula experience of Day 4, but I'm fairly sure it went into the left arm for the 3rd time without much of a problem, courtesy of Jane who we repaid with cake for her services to stabbing us. After Pete and I were all needle-d up it was straight onto the IV Piriton to keep the rash at bay, a few flushes and then onto the Lemtrada. 

The most noteworthy thing for Day 4 was probably the fact that we had a change of scene due to our room being needed by the group of people known as the "Tysabri Team". This is another infusion treatment for MS and one that I was actually offered at the same time as Lemtrada. Tysabri is administered once a month as a 2 hour infusion at the JR with I think 2 hours of monitoring afterwards (don't quote me on that one, see the MS Society website for more info). Interestingly one of our MS nurses mentioned that he thought Tysabri was considered to be the most effective MS drug, both Sue and I thought that it was Lemtrada at the top but there we go. Tysabri is a great drug nonetheless but seems to have far more of an impact on your working life than Lemtrada in my opinion, I certainly wouldn't want to be trotting up to the hospital once a month for the rest of my life! Very happy to have had the choice between the two though.

So the rest of Day 4 was pretty mundane, I slept on and off for quite a lot of the day and so did Pete. My Parents came to visit for the afternoon which was nice for them to meet everyone. And although the journey home was seriously lengthy (leaving at 4:30pm and travelling down the A40, it was bound to be terrible!) my lovely friend Glyn let me tip my seat back and snooze, which was just the ticket. I felt incredibly heavy limbed when we got home and got a bit teary about having to go through another long day of treatment the following day. 

Day 5

I woke up feeling much the same as the night before and could barely lift my head from the pillow. Even getting myself to sit up to drink water felt like a marathon, cue more tears as I told Jonny that I couldn't do it, there was nothing left in me to give. However I somehow found enough energy to put myself in my hospital clothes (joggers, t-shirt and super loose cardi), scraped my hair back and dragged myself down to the sofa to glug down all my various tablets. 

Speaking of which, I would highly recommend either investing in a granny-style weekly tablet dispenser with labelled compartments for each day or writing a really clear list. By the time you have to take Omprezole daily, Anti-virals twice a day, anti-biotics twice a day on Mon/Wed/Fri and enough supplements to single-handedly keep Holland and Barratt afloat - it gets hard to keep track of what to knock back when!! 

So Glyn arrived to take me to hospital for the "last time" (I wasn't counting on this being the last just in case something went wrong) and I was lucky enough to be able to sleep on the way to the hospital which was lovely. Glyn is such a lovely person and a fantastic driver (with a great car - Toyota Auris Tourer Hybrid, you know how I love a Toyota!) so I really have appreciated the lifts and the chats this week. 

For Day 5 we were back in our usual space, room 23. Pete bless him was plastered all over with the rash again, mine was much less angry so I really did feel for him, he was coping well with it though - super strong fella! 

Sadly Jane the Phlebotomist was not on duty so we had a nice Doctor instead who managed to put the cannula in my pesky right arm super quick with little pain. Hooray! It flushed fine, (which indicates it is working) so all was well, right? NO of course not! Because my right arm is basically utterly useless and the veins are vindictive little wotsits. Chris attempted to put some Piriton through the cannula and I knew instantly from the sharp pain that it wasn't going in so out came the Cannula and back came the Doctor. Thankfully because I'd been fidgeting and fussing around for a while, I'd managed to plump up the veins in my hand and that is where Cannula #8 of the week ended up. Which freaked me out something chronic but actually it was way more convenient than having it in the crease of my arm. 

So business continued as usual until I suddenly felt a bit sick. Well a lot sick actually, Sue kindly ran off to find me a cardboard bowl and I must've looked quite green because Pete the nurse decided I needed an anti-sickness drug and went off to fetch some stuff called Cyclizine. He warned me that it can hurt as it's pumped in, and it didn't particularly hurt, but did feel quite spiky which was a little unpleasant. My sickness feeling disappeared almost instantly, and then so did my sanity...

What ensued I'm not sure I can even put into words as I genuinely can't remember half of it, but it was like an out of body experience. I don't remember what order things happened in, but I basically went loopy for about 20 minutes. And yes to those of you thinking, "well she's loopy anyway" - EVEN MORE LOOPY THAN NORMAL! My first symptom I think was an overwhelming headache that made me cry out in pain and panic, it came in waves and seemed to be this enormously tight band that moved positions constantly. I couldn't decide it I wanted to sit up, lie down or put my head on one side. Then I felt like my eyes were too big for my head and were open really wide and I definitely remember asking Pete if they were. I saw myself running around the room and crawling along the walls, that was entertaining! I was laughing hysterically, I think at myself? I wanted to burst out in song when I came out of the loo (specifically the gay anthem "I am what I am" and "Shiny" from Moana) and I suspect I possibly sang something at some point. I think I also got very excited about the Ibruprofen Pete offered me (to calm me down perhaps?) because they were bright pink. I also repeatedly asked if I was high and said I felt amazing - despite this, I will NOT be requesting Cyclizine EVER AGAIN! How on earth anyone managed to keep a straight face I don't know - Sorry Sue and Pete! 

I'm just glad I didn't try to escape or generally cause chaos, because I certainly wasn't in control! Very odd thing to experience that's for sure. It seems to be quite a rare side effect but not uncommon.

So after that fun little episode I unsurprisingly felt totally wiped and promptly enjoyed a very good snooze, (after copious amounts of chocolate which practically had to be fed to me by Sue as I was feeling pretty shaky, what a diva I am!) in fact I was so tired in the afternoon that when lunch arrived I was distinctly uninterested and had to give up eating it halfway through. I was enjoying my bread roll one minute and then practically face down in my pasta carbonara the next. Sleep was most definitely the first priority on day 5! 

With my drug induced high adding an hour onto the day's proceedings it was no surprise that Pete finished first for the day by about an hour. Saying goodbye to him and Sue was actually really hard and ridiculously emotional. Having spent 5 very long, very intense days together I felt like they were family by the end of the week and I'm pleased to say that we're still in touch now, having a support network is SO crucial to fighting MS and I really hope we get to go through Round 2 together again. We'll also hopefully be with another MS warrior called Izzy next year, whom I was due to share my treatment week with too but didn't in the end as she had hers brought forward. I think the three of us together would be quite entertaining so here's hoping we can get the timing to work. 

I finished my treatment just in time for my friend Sid to arrive to pick me up and I must admit I didn't really feel anything as the last cannula was removed. (Well pain obviously but not elation surprisingly). If anything I felt slightly sad not to be coming back in for more treatment the week after, how bizarre is that?I think in reality it all comes down to the people, I feel the same about my nurses Pete and Chris as I did about Sue and Pete. The best news I had all week was that Chris is now my designated MS nurse rather than Ana the clinical research MS nurse as Ana is undertaking her clinics in Banbury more often than in Oxford. I love the idea of seeing someone twice a year who has seen me at my lowest, held my hand whilst I sobbed, massaged my back when I couldn't breathe and made me cake on my birthday - I will most definitely look forward to my appointments with her, she is a very special lady indeed. 

It's 2 days post treatment now and I have honestly spent nearly the whole weekend asleep. I'll do a "post-lemtrada" blog post next as the weekend has been fairly rife with symptoms and the recovery period is certainly in full swing.

For now, it's over and out, thank you again for all the messages of love and support. I really appreciate them and feel so very loved.

C x

What did I get for my 30th Birthday? Lemtrada Day 3!

What. A. Day.

Last week I had a sudden urge to google "things you should've completed before you hit 30" and I was surprised to find that it was a fairly tedious list and that I'd actually completed a fair amount of it anyway. I'd like to think that based on suggestions from friends this is because actually 30-40 is the decade for big exciting things and dramatic new experiences. That's probably having kids isn't it? Oh crumbs...

...So with the theme of trying dramatic new experiences in my mind, I started my day by having a battle with a Cannula because the last two days had gone far too swimmingly and it was about time we had some drama. 

Those of a nervous disposition please skip down to the starred section because I will go into details here. I'm sorry to do so but actually this blog is first and foremost about the MS journey and this bit is an important part of Day 3.

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The registrar came round to our room on the ward nice and early this morning, about 9ish I think which was fab, the quicker we start, the quicker we finish. I'm not sure what it is about the Doctors at the JR on our ward, perhaps they have to pass some kind of extra exam before they let them join but they are all lovely, cheery and super glam. 

Registrar lady attempted to put the cannula in my right arm as I'd had it in the left for the last two days and the veins seemed reasonable. She was incredibly gentle so I didn't really feel much at all, great I thought! Nope. I was feeling nothing because the veins were most definitely winning at hide and seek. So back to the left arm which admittedly wasn't looking particularly rosy by day 3, more of a cabbage-y purple and green palette. 

I was pretty tense by now and not coping as well as the previous two days. Luckily I had Sue and Pete by my side and Chris the nurse too for moral support. How Sue has any skin left on her fingers I'm not sure after my manic hand squeezing and finger rubbing! Jonny returned from his trip into the main hospital to search for a nail file and better colouring pencils (Yes I'm a diva, but flaky MS nails are a real pain and I was determined not to do my fantastic colouring by numbers book a disservice), just in time for cannula attempt #2. 

Cannula attempt #2 was not fun. We tried the Left arm again and my veins resisted the needle and every attempt was uncomfortable, not awful but very different to the previous days. I mentally wrote it off as just bruising pain and held on. Chris my nurse flushed some saline through which was again uncomfortable but definitely went in. So away with the steroids we went, hooray! My arm hurt but not terribly, Chris asked me multiple times if it was unbearable and I told her I just wanted to get on with it, I could cope and I was going to plough on through. I think I lasted possibly 10 minutes if that before that idea went totally out of the window. 

The pressure in my arm reduced me to tears and I felt hideously panicky and then faint too. The pain was about 8/10 and just not something I could endure, thankfully the cannula also started leaking so it was clear that the steroids weren't going into the vein anyway. Chris was amazing, very matter of fact and said "nope we're not having this, let's get it out", the moment the cannula came out the pressure began to ease. I felt some relief but very little as I knew we'd need to make another attempt. 

I've been lucky enough to meet some really great people online and I speak to a few other Lemtrada patients who started treatment on the 19th on a daily basis. Sioned our lovely welshy Lemtrada warrior had had similar Cannula disasters on day one and had several hours of this before they managed to plug her in properly. I very much had this in the back of my mind (was it 6 attempts Sioned?) but I also knew that she'd battled through and succeeded so I pushed that to the front of my mind and clung onto the hope of being stabbed successfully - oh the things you wish for on your birthday!

Cannula attempt #3. 

Pete and Chris the MS nurses offered me a break before the next Cannula attempt which I definitely would have taken, however they had a cunning trick up their sleeve. I heard the whispers of there being a option to be stabbed by the one and only Jane the Phlebotomist. Jane is marvellous, gentle and carries a vampire themed tourniquet around with her on her stabbing duties - what is not to like? The moment I caught wind of the possibility of having Jane, I perked right up and told Chris and Pete that I didn't need a break and I'd prefer to have Jane. I think this MAY have caused a little upset as really the registrar could have been used again but I was pinning all my hopes on Jane and her vampires. 

In the 15 minutes it took to wait for Jane I sent out as many texts as I could asking for emergency prayer. It's all about safety in numbers when you're going through a battle and I felt I needed all the help I could get. 

Jane appeared (I nearly cried with relief!) and took a look at the right arm again. The veins were indeed behaving like absolute buggers. Jane wasn't flummoxed by this and sat gently tapping the veins, massaging my arm and wedging my knee against the chair and her knee to stop me jiggling. She had the cannula in the fleshy part of my arm ready (not painful, AT ALL) and told me she was just waiting for the vein to come out to play. It felt like hours but was probably just a minute or two before she shook her head and said "it's not wanting to join us". I sent up the quickest, most ferocious little prayer thought of "OH COME ON PLEASE GOD!" and she instantly said "It's in!". 

I have honestly never felt such relief in my life. Jane is seriously jolly lucky I didn't kiss her. It didn't hurt and I happily sat and watched the little plastic compartment fill with blood while she completed the task. Considering I hate watching anyone take blood, in real life or on the TV - for me this is massive. I was that happy about having the Cannula in me I wanted to examine it in all it's glory. 

After I was plugged back into the Steroids again I got through them in just over an hour, had a quick flush of the Cannula and then I was free to go for a little wander downstairs for 20 minutes with Jonny before my daily dose of IV piriton. 

As I got up I felt like absolute rubbish. Faint, panicky, fed up and most definitely in need of fresh air. We got outside and I just sobbed in Jonny's arms, probably the shock and relief more than anything else! I rang Mum for a pep talk as she's the queen of Cannulas and well, anything painful really (after all this is the woman who accidentally had fluid removed from her lungs with a massive 6 inch needle without any anesthetic by a slightly frazzled but enthusiastic nurse last year!) I have no idea what Mum actually said to me and Jonny, sorry Mum, but it did the trick as I was ready to head back up to level 2 ready for the next step of the day. Hooray for parents!

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No more squeamish bits from here on in I promise!

Thankfully after all that drama, the rest of the day was fine. What I failed to mention was that when I reached the room first thing I was greeted by such a lovely sight. Sue and Pete had bought me a pot of Freesias (my fave!) a card and a chocolate Lindt rabbit, the latter of which got me through the Cannula chaos. Chris the MS nurse had also baked not one but two yummy cakes for us all to nibble on! What a legend! Very lucky to be surrounded by such caring people, I am SO glad to have been made a day patient and not an in-patient like some of my other Lemtrada buddies, as the team is what makes this all the better. I was also grateful for the company of my In-laws for a little bit today, who then left early to clean the house along with Jonny after I had a steroid-rage strop last night about the most random things like door handles, clean bedclothes, toothbrush heads and bacteria risks. Thank goodness he's laid-back and knows when it's not worth taking on a MS monster in full 'roid-rage! I am one lucky lady.

By the end of Day 3 I have totally lost my taste buds so lunch and dinner were erm, fun. Semolina pudding was not even worth attempting, can you imagine? BLEURGH! Pete tells me the Lasagne was pretty good though. 

Pete and I also managed to finish the day with a touch of the Lemtrada rash, (literally just before it was time to take the Cannulas out for Pete, one minute later and it would've been a whole to harder to get IV piriton down him!) Just a few spots thankfully so nothing too bad, but you do have to watch your skin like a hawk as it's a very stealthy transition from normal to Dalmatian. Mine has spread a little further tonight so I'll be taking oral Piriton in the next half an hour to hopefully prevent it from going wild overnight. It's not itchy yet thankfully, just a little disconcerting as I've seen the pictures on the Lemtrada forum and I know how bad it can get. Hope yours has stayed fairly calm too Pete and any other Lem buddies!

Thank you all again for the messages of support, (Thanks Homegroup for the MASSES of flowers!) and Birthday messages. I must admit it's rather entertaining to read a few of them and I can't tell if they are tongue in cheek or just oblivious. "Hope you're having a wild time and the best day of the year so far Claire!" Erm... Well it's been dramatic and perhaps a sort of wild day and I suppose I can genuinely say I've spent the entire day drugged up to my eyeballs, legally. 

I've also spent at least £9000 of Jeremy Hunt's money. Win?

C x

Lemtrada Days 1&2

Bit of a delay on posting this due to a hectic few days but I thought I'd better jot a few things down tonight!

So I have just completed 2 out of 5 days of Lemtrada (my chosen MS wonder drug) and I'm pleased to say it hasn't been as scary as I thought it would be.

Last Friday I pulled the full waterworks on poor Jonny mid-way through a film we were watching called 'Bright', I think there was a needle in a scene somewhere and I just lost it - all the fear came out in one big outburst of seriously primal crying. Good job I'm already married and not in the attracting a mate stage any more - this was enough to send anyone running for the hills! Jonny was great and just held me as I let the waves of panic, grief and just sheer terror wash over me. I wailed for about 20 minutes and then was fine and we watched the rest of the film. Brill.
I think it was probably the result of bottling things up for quite so long. I'm proud to be seen as strong and very 'matter of fact' about my MS and Mum's Cancer journey but actually sometimes you need to show the vulnerable side too. In fact I once really upset Mum because I made sure NOT to cry in front of her every time she had bad news about her cancer progressing to the point where she thought it just wasn't affecting me. It really was, I just chose to wail at home! We do sometimes cry together now but she's my inspiration and she knows that now. We were lucky enough this week to have the fantastic news that she's being offered more Cyberknife treatment at St Barts for her Brain mets and possibly immunotherapy and a drugs trial - this all happened on Monday, the same day I started my Lemtrada treatment, it's been tense I tell you!
So yes, a real inspiration for me. 3000 steps on her step machine is apparently the key to battling metastatic Breast Cancer and fighting hard every step of the way. Love her :-)

Anyway sorry Mum, back to me! 

So after an awesome surprise 30th birthday party on Saturday (Thanks Jonny!) I spent most of Sunday prepping for my treatment. I packed my bag with lots of things to do, most of which were presents from my friends such as colouring books (I've never tried them until this week and my goodness are they good), word games, puzzles and things to read. 
I also packed an absolute mountain of food, in my usual 'Barbara' fashion I was roasting mixed nuts with garlic and thyme at 9:30pm Sunday night and decanting tinned pineapple into tupperware containers ready to combat the nasty steroid taste, as you do! Mum and Dad also kindly gave me a cosy throw and a cushion to take in with me which I have very much made the most of.

Sunday night was a pretty patchy night's sleep but not too bad, up bright and early at 6am ready to leave at 6:45am to get to the JR with our brilliant Chauffeur for the week Glyn Rees (my friend Sid's Dad who is the most lovely chap and has a huge fan base in my family as he's an ex RAF Pilot with a pretty star studded list of planes that he's flown!). The trip to Oxford was reasonably quick, (cheers A40) and after a few sessions up and down in the lift where I cursed myself for not writing down directions to the ward, we eventually found our way to the Neurosciences ward, room 23. There I met our two wonderful nurses Pete and Christine and my Lemtrada buddy Pete and his partner Sue. 
We all clicked instantly which has been my saving grace this week, it feels like a real team and I actually look forward to going into the JR each day because I feel so well supported.

Day 1
I was pretty tense about the cannula being put in having only had one once before, but it went in like a dream, hooray! The Doctor actually asked me where I wanted it which threw me a bit, (should've thought of a witty response for that one, maybe tomorrow!) but I had it in the crease of my left elbow. To those of you who are squeamish - I PROMISE I WILL NOT POST PICTURES! We signed upteen consent forms and as both Pete and I had agreed to be part of a clinical trial, we also had to complete quite a few questionnaires and a brain puzzle. I took the puzzle incredibly seriously (a timed codebreaker) and properly went for it which took the researchers a bit by surprise I think! LOVE A PUZZLE! Not bad for a fairly foggy brain. They and my husband were impressed!

We had an hour of steroids which tasted of metal but this was quickly eased by extra strong mints. Other Lemtrada patients had recommended Pineapple which did ease it a bit but nowhere near as well as the mints. Then a half hour break, time for a quick wander down to Pret a Manger and breath of fresh air before it was back up to the room for a dose of IV pirition and a flush to clear the system. Then at 11:49 we got our first dose of the good stuff- Lemtrada! 

At £9,000 a bottle (1.7ml in a dilution I think?) every drop is precious so it does drip through slowly. On day 1 it took 4.5 hours. I had to have regularly stops for loo breaks as I was drinking like a fish and downed 2.5L of water on day 1, woohoo! We had 15 minute observations for the first hour, which includes blood pressure and temp, then down to half hourly and finally hourly. It does make it hard to sleep but I had hyperactivity brought on by the steroids all day and found myself jiggling around and practically doing chair aerobics rather than sleeping anyway.
- By the way, if this blog post is more fast paced than usual and lacking in punctuation, it's because I'm still pretty hyper now!
Lemtrada finished at 4:15pm and after 2 hours of further observations and a saline flush, it was time to take the Cannulas out and send us home. I was pretty wiped by that point and very much ready to collapse in a heap on the sofa with Callie the cat and Jonny :-)

I luckily had a fairly goods night's sleep and slept from 11pm-4:30am, not bad considering the steroids are meant to cause huge sleep disruption! Slightly puffy face the next day but nothing much to report in terms of symptoms from the drugs.

Day 2
Today we got a bit held up as the Doctors didn't come round to put the cannulas in until 9:30am. It was a bit of shame but they do have a whole neuroscience ward to attend to so certainly understandable. In the end the Phlebotomist took pity on us and although it hurt a bit more today (same position as Day 1) she managed a one attempt job, yay! 
Today however I did have a bit of a mare with the steroids. I had my old housemate Sid Rees with me as my entertainment buddy as Jonny went back to work today and while I was in the middle of playing good old 'dots and squares' with her I felt my breathing change. It was hard to breathe in without coughing and it made me panic a bit as although breathing out was easy and very normal, it was really hard to take enough air in. The nurses Chris and Pete were AMAZING and watched me like a hawk, even my Lemtrada buddy Pete#2 was concerned for me and was providing moral support which was lovely. We got my breathing under control by stopping the steroids for 10 minutes and standing me up to do some steady breathing. It thankfully passed quickly but the Doctor came down in the afternoon to examine me and has ordered an inhaler as a result in case it happens again tomorrow. Possibly a touch of pleurisy apparently or simply just a reaction to the very strong dose of steroids - 1000mg each day Monday-Wednesday! 
The rest of the day went without a hitch and felt a lot quicker than Day 1. I didn't get hyper until I got home which was a nice change but my legs are very heavy tonight. 
I should also mention that the meals at the hospital have been REALLY good, thanks to our lovely housekeeper Pete#3 (The JR likes to collect Petes) who comes round with our menu choices each day and encourages us to tick the entire list of puddings to help with the steroid munchies. I'm not tending to eat dinner at home at the moment as I've usually spent the entire day snacking, if I'm not the size of a house by the end of the week it will be a miracle. They actually ask us our weight each day to check we're on the right dose of drugs, and I'm strongly considering adding 1kg on per day, as that is approximately the amount of mixed nuts and chocolate I'm consuming in between each meal! 

As I sign off tonight the dreaded Lemtrada rash MAY be starting to make an appearance but I've had extra Piriton and will take some more before bed which should help, it will also knock me out - added bonus there! 

Thank you to all those sending messages of support, if I don't reply quickly it's because my brain is a muddle or I'm in the middle of chair aerobics sorry!

Much love,

Claire x

5 days to go!

Hello!

It's the final countdown til my MS treatment begins on Monday 19th Feb. I've chosen a drug called Lemtrada and I will be treated as a day patient at the John Radcliffe in Oxford. 

I met my lovely new Neurologist Dr Gabe DeLuca back in December last year and we went through my entire medical history and discussed treatment options where he offered me three possible drugs: Tysabri, Lemtrada and Cladribine.

I also endured another hilarious physical examination, this time led by his two medical students where I discovered that I cannot tightrope walk backwards (Surely this isn't that unusual?) and they picked up that when I walk I don't swing my right arm. It was fascinating, entertaining and at least this time no one told me I had a wonky face! I particularly enjoyed egging the students on to whack me harder when testing my reflexes, they were a bit too gentle to get my limbs moving bless them.

The drugs discussion in the appointment did come as a bit of a shock though, (WARNING - This bit may bore you!) to explain first, the drugs available for my type of MS (Relapsing Remitting) fall into three categories which correspond with how active your MS is. The categories are: 

• CIS (Clinically Isolated Syndrome) where you experience one episode but may not go on to develop MS 
• Active RRMS (Relapsing Remitting Multiple Sclerosis) two relapses in the previous two years
• Very Active RRMS - highly active despite treatment OR rapidly evolving severe where you have two or more disabling relapses in the previous year and show new areas on damage on two consecutive MRI scans.

The drugs themselves are then categorised as Moderately effective - reduces relapses by 30%, More effective - reduces relapses by 50% and Highly effective - reduces relapses by two thirds 70%

I was very much anticipating that I would be firmly in the Active RRMS category as although one of my relapses (or episodes in my language) WAS disabling for a short period, it hadn't left any lasting damage. I had pretty much planned to ask to be given Tecifdera which is a tablet, because I liked that it wouldn't interfere with work and the side effects weren't too bad.

However, Dr DeLuca dropped a bombshell and showed me my MRI scan pictures. The lesion on my brain is pretty sizeable and active, and there were too many little active lesions on my spine for me to count from the picture. He also felt that I have actually had 4 relapses in 18 months - hence the classification as Very Active RRMS. Gulp.

Although I have minimal symptoms right now, (not even fatigue this week hooray!) he explained that my body could spring another relapse on me at any point, and the next episode could cause lasting damage. So I was offered two highly effective drugs and one brand new drug called Cladribine which was only released in the UK this January. 

I was worried at first because I wanted to keep the strongest drugs in reserve. Kind of a "if this doesn't work, then we've got something else left to try". So to have the strongest possible drugs recommended right now was a massive shock. I do understand though that it's important to hit MS on the head early, to stop it creating any more damage.

After a LOT of googling and talking to people online I picked Lemtrada, the reasons for which I will explain in the next post. What also swung the decision was that my amazing 2nd Cousin Rachel has just had Lemtrada and she was able to talk me through the pros and cons of each treatment. Yay for fab family members!

So my treatment next Monday will entail 5 days of IV infusions, roughly 6 hours a day, which is repeated again a year later (only for 3 days) and monthly blood tests to monitor my levels for the next 5 years. 

The picture above is taken from my very swanky Lemtrada handbook which came in it's own purple leather wallet - no expense spared here! I love the picture though, it makes it much easier to understand what this drug actually does. Basically it completely resets my system and gets rid of all the hyperactive white blood cells that are nibbling away on my much needed Myelin. 

As I will have ZERO white blood cells for a while I've taken some time off work (both school and repairing) and I will have to stay away from anyone who is even the tiniest bit ill. I've also just paid to have the house "deep cleaned" by an awesome local cleaning company who specialise in Military march-out cleans. Thank you Sam! Pressed for Time Cleaning Company

Must head back to the prep now, I'm currently in the process of planning 4 weeks of music lessons, filling the freezer and getting things ready for next week. So much for half term!

Much love,

Claire x

My MS Journey so far..

Hello hello. 

The purpose of this blog is purely for me to keep a record of my MS journey, I would love to think that other might find it interesting but equally if it's just me using this page as a diary then I'm quite happy with that too. I am about to commence on one heck of a treatment journey that will last 5 years so I thought it was probably a good idea to reflect on what goes on when etc. This is also inspired by another blog I've been reading by a fellow MS warrior woman who has had the same treatment that I will soon be starting. Read her blog here - Tracy's Lemtrada Journey

So most of the ramblings on this blog will be about MS, and if you've ever met anyone in the MS community you will know that we LOVE to support each other and we're all desperate to hear stories about treatment/symptoms/progression etc. Why? Because this disease is terrifying and any tiny piece of information that gives us comfort that what we're feeling is actually "normal" is massively important.

A little background on me - My name is Claire, I am rapidly approaching 30, married to my lovely husband Jonny and we live in Oxfordshire with our cat Callie. I currently work 0.6fte as a secondary school music teacher and I repair woodwind instruments part-time for the local music service and various local musicians. I also regularly play clarinet/flute/sax for several musical theatre companies and a few amateur orchestras. Finally I also have several private woodwind pupils because I'm a workaholic and I don't know when to stop! In my small amounts of spare time (that I should spend resting but rarely do) I love to cook (not bake, that's a disaster) grow fruit and veg, make homemade presents/decorations and drink lots of wine. Basically I want to be Barbara from The Good Life - hence the title of this blog! MS and the word good are potentially a bit of an oxymoron and I'm sure during the journey I will certainly not feel that this is a "good life" at times but I do have a very positive outlook and I fully intend to make the most of my situation and to continue to have a "good life".  

So that's me - now for the important bit. My MS journey started in November 2016 when I lost all feeling on the left side of my face. It started in my lips and I figured it was just because I was teaching in a FREEZING cold classroom (our school often sits in the "heating is for wimps" mindset). I already have something called Raynauds phenomenon where you lose blood flow to your extremities and they turn white, so I figured it was just something like that.

Funky huh? I love freaking people out with this, "dead fingers" look. It does however, get quite annoying when they start to go numb. And then blue.

Anyway, so I thought very little of the numb lips until it turned into a numb face. I mentioned it in passing to our the office staff at school who are very good at looking after me and pretty much made me ring the doctors there and then. So off I trotted to see the emergency doctor who checked me out, decided it wasn't a stroke or Bell's Palsy and referred me to a neurologist.

The Neurologist appointment wasn't until March (classic waiting times on the NHS!) and I saw a fantastic Neurologist who put me through my paces in a physical examination that felt more like an aerobics session! Lots of "lift this arm up, touch your toes, walk backwards, walk forwards, smile, frown, stop laughing!" It was mad. The facial numbness had only lasted a week so she was rather cross that she hadn't seen me when the actual episode was occurring but NHS waiting lists sadly are what they are.
After the examination she declared almost instantly that I had a wonky face but I had mostly normal responses. I felt a little bit surprised but according to my dear friends and family who are so encouraging all the time and not at all insulting, (ha!) I've apparently been lopsided all my life! Cheers folks. I must admit I spent a good week trying to smile normally and evenly but I looked even more odd than before so I've embraced my lopsidedness and carried on! 
Now the next part is where I stupidly delayed my own treatment as I got very confused between what an MRI is and what a CT scan is. The neurologist asked me at the appointment if I would be willing to have an MRI scan, I said "is that the Polo" and she of course said yes. Because to any Doctor, yes an MRI does look like a Polo I suppose. What I should've said was, "is it the super noisy hideous tunnel version of a polo that will send my claustrophic self into a meltdown rather than the nice machine where you can see out the other side?"

So after agreeing to have one of these hideous scans, I realised my mistake via a quick chat with google and luckily got it rescheduled for an open MRI scanner. Lovely, or so I thought...

So normality resumed for several months while I waited for the scan. Then in early July I suddenly lost all feeling in my right shoulder which rapidly extended down to my arm, hand and fingers. I went to A&E straight away this time and had a CT scan (rather pleasant, not scary at all - because it's a polo!) and my first ever canula. The canula was hilarious in itself, I'm not a huge fan of needles and I honestly thought the nurse was just taking a blood test until she slapped a massive plaster on my arm and menacingly announced "that will do, FOR NOW!" I was packed off to the waiting room with Jonny who practically had to hold me down whilst I freaked out about being able to see a tiny plastic capsule of my own blood attached to my arm. Luckily the waiting room was mostly empty but Jonny was in hysterics as my wails of "This is not what I signed up for!" carried on. 

The numb arm/shoulder/hand lasted 4 weeks in the end and sadly I still have numbness in my hand today (Feb 2018). Luckily it hasn't stopped me playing but it has taken me a while to get used to it, especially as I can't particularly feel pain or temperature in that hand any more. 

So fast forward now to August 2017 where after a lovely weekend in the New Forest we arrived home and upon getting out of the car I realised I couldn't feel my knee. I knew it wasn't just numbness from travelling as I tour Europe twice a year both with school and with an orchestra I work for and 24hr coach journeys are the norm for me - 2 hours in a car was nothing. I got Jonny to do a touch test down each leg and realised that I had numbness from the knee to the toes on my left side. By the next morning it had extended to my left armpit.
As a result of episode 3, I had to wave goodbye to any hopes of waiting for an open MRI scan (the waiting list is huge) and had to bite the bullet and have a brain MRI one Sunday and a whole spine MRI the weekend after - God Bless the NHS for working weekends! The MRI scanner was terrifying. I had no sedation as I got confused and thought it was IV but apparently I was meant to request tablets from the doctor, oops. The radiologists  however, were lovely and to help with the claustrophobia they let me have Jonny in the room with me as long as he wore ear defenders and didn't get in the way of the scanner. Jonny stroked my hair for the brain scan from one end of the machine and held my hand for the spine one. I listened to him rambling on about carpentry in between the "music" of the machine (very minimalist!) and I prayed my absolute socks off, and survived!

A week later I had THE call from my neurologist who told me very gently that they needed to see me within a week. I asked if they'd found anything and she was kind enough to let me know that it was what they had suspected, I had inflammation show up on both scans. As I am an avid fan of doctor google, which I know isn't great but I like to have a bit of an idea, I sort of knew what that meant. 

So in we went to the JR where I met my neurologist and my new MS nurse. When she said the words "It's MS", I must admit I didn't really feel anything. I think perhaps because I knew it was likely to be that. I asked to see the scans and she refused which was a shame but at the time it was probably for the best. I was sent away with a flyer for the MS team and told to take some time to get my head around it and do some research before I told family, work etc.
For once I actually did and I can totally recommend being educated on MS before you utter anything to anyone. I read every website, every leaflet and wacthed every video I could get my hands on. And it paid off! I had several friends get confused with MND and MS and also ME, so I was able to gently explain the differences to them. I also was able to have a fantastic meeting with my headmaster early on where I gave him the MS information for employers document and we had a really honest and open discussion about the future. I asked for a few reasonable adjustments such as a high backed stool for when I was conducting and to have an occupational health appointment at the earliest instance as I wanted to protect myself for the future. In my mind, it was good to see occ. health early while I was mostly well to have that down on my record. The link to the document I gave my Headmaster is below - well worth a read. 
MS information for employers

So that is MOSTLY my MS diagnosis in a nutshell. I have left out lots of details about the symptoms I had in between my episodes (I call them this because they were pre-diagnosis so in my mind they don't count as a relapse, although medically they do). But this is already an incredibly long first blog post and I shall save the rest for another day! 

Last thing to say today is that I have already been prescribed a treatment for my MS called Lemtrada which will start on the 19th February. More on that and how I chose the treatment later.

Love and hugs,

C x